The rare disease hardens the skin and internal organs of young women of child-bearing age causing disfigurement, and is potentially fatal.
[5] In reaction to the lack of awareness of the disease in the medical community, she went on to found the Scleroderma Research Foundation in 1987,[2] an organization dedicated to finding a cure.
[4] According to the New York Times, "Ms. Monsky's activities generated more than $14 million for research and helped expand understanding of the disease.
Money she disbursed for basic medical research on scleroderma led to the publication of scientific articles exploring potential cures.
For example, she organized an annual fund-raiser which in 1992 combined top comedians such as Bob Saget plus fine cuisine which drew 420 people and netted donations of $125,000.